🔗 Share this article

It was a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a